Wednesday, January 15, 2014

#BoycottAutismSpeaks

November 19, 2013
To the Sponsors, Donors, and Supporters of Autism Speaks:

We, the undersigned organizations representing the disability community, are writing to urge you to end your support for Autism Speaks. We profoundly appreciate your interest in supporting the autism and broader disability communities. Our work is about empowering and supporting people with all disabilities, including adults and children on the autism spectrum, to be recognized as equal citizens in our society and afforded all of the rights and opportunities that implies. Unfortunately, Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities. It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.


This statement appears on the website of Boycott Autism Speaks , an effort by 'those in the disability community" to express their frustration with one of the larger autism advocacy groups. I will admit from the outset that talk of boycotts usually puts me off. From Rolling Stone magazines to the movies of racist entertainers, if you try to tell me what I should do, yeah, we're done. If you just share with me why you are doing it, I am willing to listen. And as the father of two autistic children, I am more than willing to listen to those who have an issue regarding this...

So the undersigned organizations represent the disability community. Oh, wait. Disability? No... disorder? I'm not sure that's the correct term either. Differently abled? Yeah, sounds too much like a bad 70's sitcom trying to be relevant. I question whether "the undersigned organizations" can represent "the disability community" when the more active members of said community can't even agree on terms. I do believe that the words we use, as well as the ones we don't, have an effect on how we treat those around us, both consciously and unconsciously. A Commie? Get out the torches and pitchforks! A person of Russian descent? Well... that's different. Just someone from another country is all. Words can inflame passions or simply describe the qualities and features of a person. Depends on the one using the words.

Twitter has been a godsend to me as a parent of autistic children. My support group- people like Lisa, Kate, Amy, Celeste, Christa and many other men and women that I have never met. I am not sure what I would do without having my "Tweeps" to support and sound off to. Twitter is also one of the battlegrounds where support for this boycott is being fought. So it's to Twitter that I go next.

" is not a disability, it's a differbility." - Wendy Lawson (tweeted by @SJ_Cuthbertson )
NEWSFLASH guys-autism IS NOT A DISABILITY. - @CaseyRoyalBanks
is not a , it is a different ability. @asnlifecoach
is not a Disability its an ability to see the world uniquely - @JulieKillworth
Autism is not a disability or a disease! its what makes that person who they are! - @QCPAC

"It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community." Really? Because maybe the "community" needs to find new and less controversial ways to show their "commitment" to those who see things differently then they do.
Autism Speaks’ senior leadership fails to include a single autistic person.Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership.

This part of Boycott Autism Speaks statement of purpose is something I can get on board with. Does anyone remember the House Oversight and Government Reform committee hearing on birth control access? Yeah, I didn't think so. Doesn't sound like anything that anyone I know would want to scrapbook or distribute bootleg recordings of. The House Oversight and Government Reform committee hearing on birth control access took place a year ago, and became controversial from the outset because the first panel of witnesses featured a Roman Catholic Bishop, a Lutheran Reverend, a rabbi and two professors. No, not the setup to a joke... but in many people's minds it was a joke, because there were no women. Men want women to be in charge of the contraceptive use (because let's face it, condoms suck), but they won't let them have a say in the regulatory process regarding contraception? What the hell?
 
Same thing here. Autism Speaks, you might want to give consideration to this part of the boycott rather than write it off as the rantings of a group of crackpots.
 
Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public.
 
Anyone here a Jenny McCarthy fan? Jenny McCarthy has moved on from being a piece of eye candy in the eyes of many men to a position on the television talk show The View and a place as a de facto leader in the autism community. Many people look up to her because of her published books on the subject as well as her passion for being the mom of her son Evan, who has autism. Or did have autism. Or had a mild form of autism. I can't keep up on the subject. In any event, Jenny McCarthy is a proponent of the view (pardon the pun) that vaccinations are a cause of autism. That mercury contained in vaccines as a preservative is harming our children. That you shouldn't get your children vaccinated.

I get it. The one most frustrating thing about this journey that is wrought with frustration is that there are no answers, just ambiguities. I want to know why my children are autistic just as much as anyone out there. My love for my children is not conditional to how their autism affects them, it transcends that; but it is because of my love for my children that I don't want to see them afflicted with this disorder. Oh, wait. Not afflicted, gifted. Yeah, right.

But wanting answers doesn't mean that we should stick to answers in the face of conflicting evidence. And it is my belief (and the belief of the CDC , The Institute of Medicine , and the Journal of Pediatrics ) that the idea that vaccines cause autism has little merit. And Jenny McCarthy, by continuing to be a proponent of this idea, is part of the problem of diseases like whooping cough making a comeback after it was thought that they had been eradicated.

Autism Speaks, you might want to think about this point a little more.

Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families.

Well, yeah. Tell me something I don't know. All flippancy aside, this is not unique to Autism Speaks. Tell me an organization that doesn't use donated funds for administration, salaries, public relations. They all do to some degree or another. Doesn't mean that they should, but I won't jump down the back of Autism Speaks for paying their CEO. There might be more productive ways of questioning them on this than Twitter-bombing. For all the good qualities of Twitter, it has one drawback in that it is difficult to discuss serious issues. It lends itself quite nicely to soundbites and buzzwords.

Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society. In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies.

This is the most inflammatory part of their position statement and the one I have the most problems with. The particular portion of the Autism Speaks website that they are referring to is here , a statement by Autism Speaks co-founder Suzanne Wright, on the eve of their first national policy and action summit in Washington DC. Allow me to quote a lengthy portion of the "offending" passage:

Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit. We will demand a national response.  
Don’t our families deserve it? America has always been about its great people.  
Yet, we seem to have forgotten our children - and our children are our future.  
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.  
These families are not living.  
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.  
This is autism.  
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.  
This is autism.  
On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure. Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.  
Maybe their child has been trying to bite them or themselves.  
Maybe they can’t afford the trip to a doctor specializing in autism. 
Maybe there is a waiting-list for ABA, speech and OT.  
Maybe their insurance won’t pay.  
Maybe they don’t have the money to pay a special lawyer to fight for school services.  
This is autism.
Allow me to point something out. Nowhere in this passage are they saying that all autistic people are tragedies, that all autistic people and their families are barely living, that all of the negative behaviors of some on the autism spectrum define the whole of the spectrum.

But it represents some of them. Don't their voices deserve to be heard?

Let's listen to my voice for a moment, the voice of an autism dad, a portion of the community which is radically underrepresented and not listened to much at all, to the detriment of the entire community.

If you were to come to my Elyria home you would likely notice that the drywall is in rough shape. And so is my son's forehead. He engages in self-injurious behavior in which he will bang his head on anything solid over and over again. He will bang himself bloody and still keep going. In order to keep him from injuring himself I take the injuries for him- I have been kicked in the legs repeatedly, headbutt in the chest and face, and kicked in the groin. I don't like it, but I take it because he is my son and I don't want him to get hurt.

My daughter started her period last year, about six months ago. She is non-verbal, so she doesn't understand what is happening. But we know when it is on its way, because she will howl in pain for several days. And when she howls, my son goes right back to headbanging.

We have several holes in our walls. How am I going to pay for them? My wife can't handle the aggression of a 13-year-old boy who attacks her without provocation. She can't handle both kids at once; neither can I. So I don't work. I can't. So the damage goes unrepaired in order that we may eat.

If given the opportunity my son will attempt to make his own eggs, he will try making a sandwich which ends up with him eating half a jar of mayonnaise and puking it all over. He needs to be watched. So I need to stay up with him until he falls asleep, and wake up when he does. I get about five hours of sleep a night. If I'm lucky.

This is autism. Is this the whole of autism? No, but it is my story. My friend the Lutheran pastor has a different story. My friend in Canada has another story altogether. Boston, Ireland, England, Baghdad, Israel- all different stories. All important stories. All autistic stories.

They call it a spectrum for a reason.

To the supporters of Boycott Autism Speaks, your lives are not tragedies. They are not comparable to having a fatal disease. they are not comparable to being kidnapped; they are your stories and deserve to be heard.

But my children are not "differently-abled", they are disabled. My children can't speak for themselves, they can't even communicate very many things in an alternate way. They need my wife and I to speak for them. You can call them "kids with autism" or "autistic kids" or "kids with a verbose father who has diarrhea of the keyboard", I don't care. I cannot concern myself with quibbling over labels. Don't ask me to.

This is my story. And other's stories. Stories that are being downplayed by Boycott Autism Speaks in an effort to get their stories across to people.

Maybe we could just cut the rhetoric and listen to each other.

Until then, I cannot support #BoycottAutismSpeaks .

10 Comments:

Blogger Short Bus Mom said...

This comment has been removed by the author.

2:55 PM  
Blogger Short Bus Mom said...

I could not agree with you more. Here is my post on the same topic: www.shortbusdiaries.com/?p=585

2:56 PM  
Blogger Nate sportyboy said...

Suzanne Wright IS insulting us. autism is part of us, so to say it's a burden IS calling us a burden too

3:41 PM  
Blogger Short Bus Mom said...

I'm OK with that. Having a low-functioning autistic child IS a burden, one that a person who does not have to raise such a child could not understand. Also, I will likely never know how my son feels, but I'm guessing that he might wish for a life without autism, if such a life allowed him to communicate, get what he wanted and needed, and enjoy a level of independence and choice that he cannot achieve on the current path he is on. If I could prevent his form of autism from taking hold (and yes, I said "taking hold") of another person's brain, you bet I would. And, despite their/your best efforts, no advocate is going to explain away the burdens that come with our life. No mind-blowing blog post is going to take away the pain and struggle we face every day in our home. Autism IS a burden for us, and for my son. So go ahead: have at me. Feel free to pen your most scathing response. No amount of vitriol can change the way I feel about my own life, which is controlled/guided/limited by autism.

3:50 PM  
Blogger Nate sportyboy said...

I'm sorry you don't see any positives in your child. if you can't deal with that child, don't raise him. You have no idea how he even feels either, so why on earth guess?????

11:05 AM  
Blogger The Man said...

This comment has been removed by the author.

11:15 AM  
Blogger Nate sportyboy said...

but what you don't understand is that autism can be a really really good thing too.

7:51 AM  
Blogger Nate sportyboy said...

all you seem to be talking about is how hard it is for YOU.

7:52 AM  
Blogger EJ said...

This comment has been removed by the author.

4:57 PM  
Blogger EJ said...

I am someone who does support the Boycott Autism Speaks movement- just want to make that clear from the get go. I understand that I have had it a lot easier than you have in raising my 3 Autistic sons, in that they are verbal, don't need 24/7 supervision, and will likely be able to live independently when they are ready to move out. Your voice does need to be heard also. In your reference to one of the reasons the Boycott Autism Speaks community is so up in arms about Autism Speaks' rhetoric, it is not only Suzann Wright's 'Call to Action" piece that the Boycott Autism Speaks is so up in arms about, it is the "Autism Everyday" video from years ago, it is the "I am Autism" video also from a few years ago. It is their continued pattern of casting Autism as a horrific 'disease' for ALL Autistics and their families. It is the sensationalizing and marketing pieces that claim that it is kidnapping ALL of our Autistic children, ruining almosst ALL marriages and other horrible things that they claim Autism is responsible for that people who support the Boycott Autism Speaks movement are concerned about. It is AS's goal of eradicating Autism through means such as pre-natal testing.

Another issue is they purport to speak for Autistics, but they are not. The real Autism community, the folks on the Autism Spectrum themselves, have attempted to communicate their wants, needs, desires and be heard to AS, but AS is not listening. Shouldn't they be listening a bit harder to the folks they claim they are supporting?

5:27 PM  

Post a Comment

<< Home